This Spina Bifida parent quickly learns to be the mother of all advocates.


Q: Where do you live?

A: Central Utah

Q: How old is Madilynn?

A: 13 days old

Q:What type of Spina Bifida does Madilynn have?

A : She has Myelomeningocele from L4-S1 and the sac ruptured at birth.

Where can we go to continue to follow Madilynn’s story?

A: Check out my blog or on IG @Britneysteele1313


When we first found out Madilynn had Spina Bifida, the first thing we were told was that abortion is an option and a lot of people recommend it. I had a lot of people telling me that she wouldn’t have a good quality of life and that I was selfish for keeping her and giving her a chance at life. More than about 50% of babies diagnosed with SB are aborted. For Chad and I this route was not an option. We knew she was going to be a little fighter and we knew we could give her a great life. I have no regrets for choosing to keep her.

madilynHaving that be the first option we were given really shook me up. At the beginning of this journey I naively trusted that all our doctors would have Madilynn’s best interests at heart and be fully committed to giving her the best life possible. Don’t get me wrong, we have some amazing doctors who definitely know their stuff, but they were not and can’t be fully invested like we can. I didn’t realize it until later on when deciding our birth plan, no matter how great the doctors are, how many people love and support us, that it was up to Chad and I to advocate for this little person we created. I realized that no one would fight for her like we could, and that we needed to trust our instincts and decide what’s best for her.

I didn’t realize that we were the only ones who would fight for her best chances. We were the ones who would have to live with the outcome and we have the most invested into every decision being made this entire pregnancy.

madilyn 2.jpg

When we were talking about the birth plan with our specialist. We kept getting a lot of mixed answers on the safest way for her to enter this world. On top of the mixed answers from our doctors, the online SB community had me convinced c section was the best and safest way possible for her to be born. Our doctors were pushing for natural delivery, but they kept throwing my recovery into the mix of why they were choosing that route. I don’t care about what happens to me. I want to do what’s best for her. I can deal with what has to happen to me in the process.

After nine months, I know this is common sense for most, but I realized it is my responsibility to decide what is best for her until she can choose for herself. For all the special needs moms out there, trust your gut and go with your instinct. We know what’s best for our little ones. We know their situation, and we know our kids better than anyone else. As parents, we deal with the outcome so ultimately we need to decide what’s best for our kiddos.

I loved how Madilynn's Mom Brittney gives us a little insight 
into the day she found out her child was going to have some 
special needs. Unfortunately, the doctors tend to focus on the 
negative things. They have to...It's the way of medicine,
I guess.  How could they tell you all the good stuff? They've
never met your baby and certainly can't predict the future. They can't see the positive impact that child's life will have on you.But, I hope you are ready for the ride Britney, because 
Ms. Madilynn is going to be a rock star!

Britney talks about being the advocate for your baby! You learn
very quickly that you have to continue to advocate for your childfor the rest of their lives. You learn as your child's parents, 
you know what is best.

I Have to repeat what Britney said because I believe this is mostimportant! "trust your gut, and go with your instinct."

Published by

Kristin Marquis

Hey there! I'm Kristin. I live in the beautiful Seacoast town of Portsmouth, NH with my hubby Matt and our rescue pup Charlie. I was born with Spina Bifida and made this website in hopes that I would reach other people going through the same difficult things as I have and also to inspire others to embrace their differences and live Spina-Beautifully!